Organ transplant no match for self-determination

Published: Wednesday, February 20, 2013 at 4:30 a.m.

Last Modified: Tuesday, February 19, 2013 at 9:51 p.m.

FLAT ROCK — Joan Kennedy, 68, sat in her living room on a recent afternoon, rocking back and forth in a rocker, wearing a yellow-striped sweater. The sweater meshed nicely with the pastel yellow walls, chairs and couch in her Flat Rock home.

The color is symbolic of Kennedy's life, which has been both bright and inspiring despite decades of illness.

Twenty years ago, Kennedy wasn't sure where life would take her after a kidney and pancreas transplant. In 1993, transplant surgery was still in its infancy. Kennedy was one of the first 1,000 people to undergo the operation, and a transplant of two organs was almost unheard of.

Doctors told her the organs would last about three to five years. Today, retired with children and grandchildren, Kennedy is continuing with her attitude of staying positive while living life one day at a time.

Life-changing diagnosis

At age 15, Kennedy got sick and the results would change her life forever.

She'd lived a normal childhood, a healthy childhood, but that changed quickly when she was diagnosed with Type 1 Diabetes in 1960.

She spent three weeks in the hospital, and some of that time was spent practicing insulin shots on oranges.

Despite the unknown and the immediate effects of her newfound illness, Kennedy beat it back, left Pittsburgh and enrolled at West Virginia University. She started school in 1962 and graduated in 1966. While at WVU, she met her future husband, Keith Kennedy, and the couple married in 1966 when they graduated.

After brief stops in Pittsburgh and New York, the couple moved to Cleveland. Although they didn't know it at the time, the move would prove to be a blessing.

Early on, they led an ordinary life. Keith Kennedy finished his law degree. Joan Kennedy finished her master's at the University of Pittsburgh. He began his career in corporate law, and she began her career as a nurse practitioner. They had two sons.

‘Dark times'

Joan Kennedy had spent the last 20 years eating healthy, living an active lifestyle and taking care of herself. The diabetes hadn't hindered her in a way she couldn't handle.

But by 1985, severe diabetic symptoms emerged. The next eight years are what Kennedy's husband refers to as the “dark times.”

Joan Kennedy began passing out, and she began to lose feeling in her legs. As she walked, a task as simple as stepping up to walk on a curb became difficult. She began trip and fall because of her inability to feel in her legs. Her bones began breaking with ease.

She began to experience blindness in her eyes because of hemorrhaging. One day, she had to pull over because she couldn't see out of either eye and wait on someone to drive her home.

It was a slow build, but by the fall of 1991, Joan Kennedy was in full kidney failure and had to be placed on dialysis.

“Eventually, the diagnosis got the best of me,” she said.

The peritoneal dialysis was rough. The size of the machine and the noise made sleep impossible, Keith Kennedy said, and added that it was like having another newborn in the house. It didn't allow Joan to roll over and the beeping was enough that neither could sleep.

“That thing was the size of a Volkswagen,” he remembers.

One of the worst things for Joan Kennedy was the loss of her independence, as she had to rely on others for things that she hadn't in the past. She lived an active lifestyle and was used to walking and biking and doing things on her own. When the bad symptoms began, she had to learn to ask for help.

“I was Miss Independent,” she said. “I didn't want anyone to do anything for me.”

Her husband stood beside her, fulfilling his promise of being there “through sickness and in health.”

“He's probably the best nurse that doesn't have a nursing degree around,” Joan Kennedy said.

That August, she was placed on the waiting list for not only a kidney, but a pancreas. In the end, that was the worst part of the “dark times,” she said.

Her husband agreed. “You were living knowing that your life could change in 24 hours constantly,” Keith Kennedy said of the wait and the nervousness.

“The waiting list was pretty long,” Joan Kenendy added. “You didn't know if you were going to live long enough to get a transplant.”

She got her answer while standing in line for medicine at a drugstore in Cleveland — a match had been found. A 38-year-old man had died of a brain hemorrhage and he was an organ donor. The Kennedys never pursued who he was to respect the privacy of the process, Keith Kennedy said.

The donor's death, however, meant that Joan Kennedy was about to receive a new lease on life. Her doctor traveled five miles to the Cleveland Clinic to confirm that the organs were going to work. After he determined they would, he harvested the organs and then did the transplant at the University Hospitals in Cleveland — the hospital where Joan was employed, and one of only a few hospitals doing transplants on a consistent basis.

The next day, Feb. 20, 1993, Keith Kennedy sat in a waiting room for the most excruciating 10-and-a-half hours of his life. The surgery began at 7:30 a.m. and didn't end until 6 p.m.

The prevailing attitude, Joan Kennedy said, is that the transplant is a cure. That's not the case, and you're only “trading one chronic disease for another.”

The new pancreas cured the diabetes. The kidney functioned properly. The diabetic symptoms, however, remained, and whole host of other problems has plagued Joan over the last 20 years.

The loss of feeling remained in her legs. Ten years after the transplant, she got an infection in her leg and it was amputated from just below her knee. She's had two knee replacements, a broken hip and a host of other problems.

None of that, however, has stopped her from living.

Brighter days

Sitting in her living room this week, Joan Kennedy could only smile when she talked about her sons and three grandchildren.

Doctors told her the organs may not last more than five years, but Joan Kennedy hasn't needed another transplant. No one knew much about organ transplants at that time, the Kennedys said, and it was just pure luck that they had moved to Cleveland near University Hospitals.

“We have been so incredibly lucky in all of this,” Keith Kennedy said.

The couple were also blessed with careers that allowed them to handle the financial responsibilities that came with the transplant. Prescription bills piled up to $1,800 per month at one point.

While there were dark times and tears, the 20 years of living a somewhat normal life can only be attributed to Joan Kennedy's attitude. Part of that positive attitude comes from her dad, and part of it comes from the people around them.

She has reached out to others with her story, but the person she's inspired the most has spent the last 47 years with her.

“I've learned more from her than anyone else in my entire life,” Keith Kennedy said, choking up. “I think Joan is focused on the ‘what I can do,' rather than the “what I can't do.”

That attitude has been key to Joan Kennedy's life post-transplant. There are things she just can't do, but instead of letting it knock her down, her attitude has been to push forward.

She can't use both pedals in her car, so a handbrake was installed on her steering wheel. She can't bike around her neighborhood, so they bought her an electric scooter. She can't get down and garden, so Keith built her a stand where she can stand and garden. There were modifications made to her piano so that she can still enjoy the hobby.

“You can sit and complain about what's going on or you can find a way around it,” Joan Kennedy said.

The couple moved to Florida three months after the transplant and then moved to Saluda eight years ago. They moved to their home in Flat Rock six years ago. During all of the transitions, Joan Kennedy worked. She went back to work just months after transplant, refusing to take the disability from the government.

She worked at the VA Medical Center before starting her own complany, Stay Well, in Saluda. She operated that company until she retired two years ago. Joan Kennedy currently serves on the board of the Hendersonville Community Co-op.

In her house, there are angels for decoration and atop her mantle are decorative pictures with different sayings on them.

The sayings on them describe Joan Kennedy's journey since her original diagnosis. Two of the signs read: “Strength of purpose; achieve the impossibilities” and “Live your dream. Love your life.”

“A lot of it is faith,” she said. “You're not in control of your own destiny. You have to work on what you can control. You take it one day at a time.”

<p>FLAT ROCK — Joan Kennedy, 68, sat in her living room on a recent afternoon, rocking back and forth in a rocker, wearing a yellow-striped sweater. The sweater meshed nicely with the pastel yellow walls, chairs and couch in her Flat Rock home. </p><p>The color is symbolic of Kennedy's life, which has been both bright and inspiring despite decades of illness. </p><p>Twenty years ago, Kennedy wasn't sure where life would take her after a kidney and pancreas transplant. In 1993, transplant surgery was still in its infancy. Kennedy was one of the first 1,000 people to undergo the operation, and a transplant of two organs was almost unheard of. </p><p>Doctors told her the organs would last about three to five years. Today, retired with children and grandchildren, Kennedy is continuing with her attitude of staying positive while living life one day at a time. </p><p><b>Life-changing diagnosis</b></p><p>At age 15, Kennedy got sick and the results would change her life forever. </p><p>She'd lived a normal childhood, a healthy childhood, but that changed quickly when she was diagnosed with Type 1 Diabetes in 1960. </p><p>“We didn't have blood tests,” Kennedy said. “We didn't have insulin pumps. We knew very little about it.”</p><p>She spent three weeks in the hospital, and some of that time was spent practicing insulin shots on oranges. </p><p>Despite the unknown and the immediate effects of her newfound illness, Kennedy beat it back, left Pittsburgh and enrolled at West Virginia University. She started school in 1962 and graduated in 1966. While at WVU, she met her future husband, Keith Kennedy, and the couple married in 1966 when they graduated.</p><p>After brief stops in Pittsburgh and New York, the couple moved to Cleveland. Although they didn't know it at the time, the move would prove to be a blessing. </p><p>Early on, they led an ordinary life. Keith Kennedy finished his law degree. Joan Kennedy finished her master's at the University of Pittsburgh. He began his career in corporate law, and she began her career as a nurse practitioner. They had two sons. </p><p><b>'Dark times'</b></p><p>Joan Kennedy had spent the last 20 years eating healthy, living an active lifestyle and taking care of herself. The diabetes hadn't hindered her in a way she couldn't handle.</p><p>But by 1985, severe diabetic symptoms emerged. The next eight years are what Kennedy's husband refers to as the “dark times.”</p><p>Joan Kennedy began passing out, and she began to lose feeling in her legs. As she walked, a task as simple as stepping up to walk on a curb became difficult. She began trip and fall because of her inability to feel in her legs. Her bones began breaking with ease.</p><p>She began to experience blindness in her eyes because of hemorrhaging. One day, she had to pull over because she couldn't see out of either eye and wait on someone to drive her home. </p><p>It was a slow build, but by the fall of 1991, Joan Kennedy was in full kidney failure and had to be placed on dialysis. </p><p>“Eventually, the diagnosis got the best of me,” she said.</p><p>The peritoneal dialysis was rough. The size of the machine and the noise made sleep impossible, Keith Kennedy said, and added that it was like having another newborn in the house. It didn't allow Joan to roll over and the beeping was enough that neither could sleep. </p><p>“That thing was the size of a Volkswagen,” he remembers. </p><p>One of the worst things for Joan Kennedy was the loss of her independence, as she had to rely on others for things that she hadn't in the past. She lived an active lifestyle and was used to walking and biking and doing things on her own. When the bad symptoms began, she had to learn to ask for help.</p><p>“I was Miss Independent,” she said. “I didn't want anyone to do anything for me.” </p><p>Her husband stood beside her, fulfilling his promise of being there “through sickness and in health.”</p><p>“He's probably the best nurse that doesn't have a nursing degree around,” Joan Kennedy said. </p><p>That August, she was placed on the waiting list for not only a kidney, but a pancreas. In the end, that was the worst part of the “dark times,” she said. </p><p>Her husband agreed. “You were living knowing that your life could change in 24 hours constantly,” Keith Kennedy said of the wait and the nervousness.</p><p>“The waiting list was pretty long,” Joan Kenendy added. “You didn't know if you were going to live long enough to get a transplant.”</p><p>She got her answer while standing in line for medicine at a drugstore in Cleveland — a match had been found. A 38-year-old man had died of a brain hemorrhage and he was an organ donor. The Kennedys never pursued who he was to respect the privacy of the process, Keith Kennedy said.</p><p>The donor's death, however, meant that Joan Kennedy was about to receive a new lease on life. Her doctor traveled five miles to the Cleveland Clinic to confirm that the organs were going to work. After he determined they would, he harvested the organs and then did the transplant at the University Hospitals in Cleveland — the hospital where Joan was employed, and one of only a few hospitals doing transplants on a consistent basis. </p><p>The next day, Feb. 20, 1993, Keith Kennedy sat in a waiting room for the most excruciating 10-and-a-half hours of his life. The surgery began at 7:30 a.m. and didn't end until 6 p.m. </p><p>The prevailing attitude, Joan Kennedy said, is that the transplant is a cure. That's not the case, and you're only “trading one chronic disease for another.” </p><p>The new pancreas cured the diabetes. The kidney functioned properly. The diabetic symptoms, however, remained, and whole host of other problems has plagued Joan over the last 20 years. </p><p>The loss of feeling remained in her legs. Ten years after the transplant, she got an infection in her leg and it was amputated from just below her knee. She's had two knee replacements, a broken hip and a host of other problems.</p><p>None of that, however, has stopped her from living.</p><p><b>Brighter days</b></p><p>Sitting in her living room this week, Joan Kennedy could only smile when she talked about her sons and three grandchildren. </p><p>Doctors told her the organs may not last more than five years, but Joan Kennedy hasn't needed another transplant. No one knew much about organ transplants at that time, the Kennedys said, and it was just pure luck that they had moved to Cleveland near University Hospitals. </p><p>“We have been so incredibly lucky in all of this,” Keith Kennedy said.</p><p>The couple were also blessed with careers that allowed them to handle the financial responsibilities that came with the transplant. Prescription bills piled up to $1,800 per month at one point. </p><p>While there were dark times and tears, the 20 years of living a somewhat normal life can only be attributed to Joan Kennedy's attitude. Part of that positive attitude comes from her dad, and part of it comes from the people around them. </p><p>She has reached out to others with her story, but the person she's inspired the most has spent the last 47 years with her.</p><p>“I've learned more from her than anyone else in my entire life,” Keith Kennedy said, choking up. “I think Joan is focused on the 'what I can do,' rather than the “what I can't do.”</p><p>That attitude has been key to Joan Kennedy's life post-transplant. There are things she just can't do, but instead of letting it knock her down, her attitude has been to push forward.</p><p>She can't use both pedals in her car, so a handbrake was installed on her steering wheel. She can't bike around her neighborhood, so they bought her an electric scooter. She can't get down and garden, so Keith built her a stand where she can stand and garden. There were modifications made to her piano so that she can still enjoy the hobby. </p><p>“You can sit and complain about what's going on or you can find a way around it,” Joan Kennedy said. </p><p>The couple moved to Florida three months after the transplant and then moved to Saluda eight years ago. They moved to their home in Flat Rock six years ago. During all of the transitions, Joan Kennedy worked. She went back to work just months after transplant, refusing to take the disability from the government. </p><p>She worked at the VA Medical Center before starting her own complany, Stay Well, in Saluda. She operated that company until she retired two years ago. Joan Kennedy currently serves on the board of the Hendersonville Community Co-op. </p><p>In her house, there are angels for decoration and atop her mantle are decorative pictures with different sayings on them.</p><p>The sayings on them describe Joan Kennedy's journey since her original diagnosis. Two of the signs read: “Strength of purpose; achieve the impossibilities” and “Live your dream. Love your life.”</p><p>“A lot of it is faith,” she said. “You're not in control of your own destiny. You have to work on what you can control. You take it one day at a time.”</p><p>Reach Millwood at 828-694-7881 or at joey.millwood@blueridgenow.com.</p>